jml
01-09-2012, 08:39 AM
Hi Friends~
So 2012 brings yet another chemo-combo for me...
Metronomic Cytoxan & Methotrexate + q3wk Herceptin.
Last week's scans were not good. Not the worst I've ever had, but definitely not good. Not even stable, which was the very least I was hoping for - anything to buy more time until Pertuzumab is approved.
The PET showed 50% increase in size & activity in a spot in my R lung, middle lobe and a R supraclav node. The 2 lesions in my colon are pretty fired up, though fortunately no worsening of symptoms, Thank God. Then a scattering of a couple of nodes around my belly & GI.
I'm so sad. Just so disheartened that Halaven+Herceptin worked pretty well for the first, short 9 weeks, then since those 1st scans on October 18, things have gone awry, and just stopped working. So scary.
Fortunately I feel well and strong. And my liver looks good - which has been a troubling site in the past, even after a R Hepatectomy in 12/05 & chemo-embo w/Adriamycin in 6/10. My bone marrow/cbc's are holding steady, not neutropenic and Hgb holding ~10, which is anemic, but not so bad, as I've been as low as 6.4 in the past. And then there's the anomally of my hair growing back. As much as I hate being bald, especially for the 3rd time, I'll take it, as long as the drugs are working.
I just feel like this disease is starting to snowball, building momentum while I'm running out of options and running out of time, running towards the unfortunate inevitable.
For the past 3 years, each chemo-combo has been working for less and less time, or not at all, and the FDA just can't approve drugs fast enough to fill up my medicine cabinet. The only 2 BC drugs that I haven't been exposed to are Cytoxan &Taxotere- though I have been on Taxol - which got me to NED, once upon a time long ago - and Abraxane, which had no effect for me.
It was a pretty bleak appointment when I met with my docs & they gave me the results, but they did some searching around, offering a Phase I study that meant I would have to d/c Herceptin, which is never a good option for me. But after a little rooting around, they brought me the info about the metronomic Cytoxan/Methotrexate + q3wk Herceptin. It really is a good option - especially since I won't have to go off of Herceptin and since my body's never seen Cytoxan. And with this metronomic therapy, the Cytoxan & Methotrexate are in pill form, so I can take those at home. And from what I've read, it's not such a crazy expensive combo b/c both drugs have been around for a long time.
Now we just need for it to work. And quickly.
At the very least, I hope for this neuropathy in my fingers/toes/feet to start to resolve so that I can feel if this supraclav node is responding to the new combo.
I start this week. I'm ready.
Then there's the matter of the repeat Brain MRI next week to take a look at a questionable spot in my L lobe, only 2mm, but so hoping it's just an artifact or some kind of treatment related change as a result of the Novalis in 6/10 for 4mm spot in the same area. I can't fathom what I'll do if they tell me it is "something". I don't know how much more I can take right now.
In the midst of this, I still haven't told my Mom because I don't want to make her worry or be scared for me. I just want her to focus on my Dad. I didn't realize how much I would need for her to just know, even if there's nothing she can do.
Keeping the Faith~
Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion. R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
So 2012 brings yet another chemo-combo for me...
Metronomic Cytoxan & Methotrexate + q3wk Herceptin.
Last week's scans were not good. Not the worst I've ever had, but definitely not good. Not even stable, which was the very least I was hoping for - anything to buy more time until Pertuzumab is approved.
The PET showed 50% increase in size & activity in a spot in my R lung, middle lobe and a R supraclav node. The 2 lesions in my colon are pretty fired up, though fortunately no worsening of symptoms, Thank God. Then a scattering of a couple of nodes around my belly & GI.
I'm so sad. Just so disheartened that Halaven+Herceptin worked pretty well for the first, short 9 weeks, then since those 1st scans on October 18, things have gone awry, and just stopped working. So scary.
Fortunately I feel well and strong. And my liver looks good - which has been a troubling site in the past, even after a R Hepatectomy in 12/05 & chemo-embo w/Adriamycin in 6/10. My bone marrow/cbc's are holding steady, not neutropenic and Hgb holding ~10, which is anemic, but not so bad, as I've been as low as 6.4 in the past. And then there's the anomally of my hair growing back. As much as I hate being bald, especially for the 3rd time, I'll take it, as long as the drugs are working.
I just feel like this disease is starting to snowball, building momentum while I'm running out of options and running out of time, running towards the unfortunate inevitable.
For the past 3 years, each chemo-combo has been working for less and less time, or not at all, and the FDA just can't approve drugs fast enough to fill up my medicine cabinet. The only 2 BC drugs that I haven't been exposed to are Cytoxan &Taxotere- though I have been on Taxol - which got me to NED, once upon a time long ago - and Abraxane, which had no effect for me.
It was a pretty bleak appointment when I met with my docs & they gave me the results, but they did some searching around, offering a Phase I study that meant I would have to d/c Herceptin, which is never a good option for me. But after a little rooting around, they brought me the info about the metronomic Cytoxan/Methotrexate + q3wk Herceptin. It really is a good option - especially since I won't have to go off of Herceptin and since my body's never seen Cytoxan. And with this metronomic therapy, the Cytoxan & Methotrexate are in pill form, so I can take those at home. And from what I've read, it's not such a crazy expensive combo b/c both drugs have been around for a long time.
Now we just need for it to work. And quickly.
At the very least, I hope for this neuropathy in my fingers/toes/feet to start to resolve so that I can feel if this supraclav node is responding to the new combo.
I start this week. I'm ready.
Then there's the matter of the repeat Brain MRI next week to take a look at a questionable spot in my L lobe, only 2mm, but so hoping it's just an artifact or some kind of treatment related change as a result of the Novalis in 6/10 for 4mm spot in the same area. I can't fathom what I'll do if they tell me it is "something". I don't know how much more I can take right now.
In the midst of this, I still haven't told my Mom because I don't want to make her worry or be scared for me. I just want her to focus on my Dad. I didn't realize how much I would need for her to just know, even if there's nothing she can do.
Keeping the Faith~
Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion. R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.